Tuesday, March 22, 2011


We are officially clear and well until Monday!  Her counts are up, she's feeling well, eating a lot and looking good.  No more at-home shots for a few weeks!  It's a short break; she will be admitted to begin the next cycle of chemo on Monday.

Now that we have survived one whole cycle, I feel much more confident about what we are doing.  She is enrolled in a research study that dictates the course of treatment; however, our doctors will change the plan if they feel she would be better off with a different medication or treatment.  Each cycle is about one month long; we repeat the current cycle three more times.  That is followed by two months of a different regimen, followed by a third course that is another few months.  We are in the most intense segment now, called induction.  This involves IV chemo, hospitalization and frequent (twice a week) blood work to track her progress.  Basically, it looks like this:
  • Induction (4 cycles of 4 weeks = 16 weeks)
    • Week 1 - Methotrexate (in-patient)
    • Week 2 - Cyclophosphamide, Cisplatin, Vincristine (in-patient)
    • Week 3 - Vincristine (out-patient)
    • Week 4 -Clear
  • Consolidation (2 cycles of 4 weeks = 8 weeks)
    • Cyclophosphamide,  Etoposide, Carboplatin,
  • Maintenance (6 cycles of 4 weeks = 24 weeks)
    • Oral Cyclophosphamide, Topotecan, Erlotinib
That's 48 weeks.  We're technically only in Week 4, since her RSV and shunt surgery caused so many delays this round.  If there were no more delays (which there likely will be - babies are not robots and we have to allow for illness and other delays), that takes us through December of 2011.  It is daunting to think about, but also reassuring that there is an end out there...way out there.


    JenM said...

    So glad to hear that she is doing well :) Enjoy your break! It seems like a very long time until December, but all you can do is take it one day at a time.

    Anonymous said...

    Woohoo! Round one is over and Scarlett is the champion! Way to keep fighting that good fight in the ring, baby! You can do it!

    PS - I don't know if you have heard, but there are a lot of people writing the Ellen show to get you a free brand new car with better gas mileage. If you want to nominate yourself, you can go to her webpage and sign up. I've heard of at least a dozen people who have nominated you guys, though. Here's hoping you win! :-)

    Michelle said...

    I nominated you to the Ellen show also. You really deserve it!! Thank you so much for letting us get to know you and your beautiful Scarlett.

    Anonymous said...

    I love to read about your progress and still think about and pray for you EVERY day.
    Jen, October 2010 mom

    Molly (from BBC March 2010) said...

    Scarlett is so lucky to have such dedicated and educated parents. Thanks for the update and hang in there...sounds like a long ride but worth it in the end.

    Tara Poor said...

    I am so glad that you wrote the plan out. It made me feel like I was sitting there anxiously counting down the weeks, days, treatments, smiles with you! You guys are always in our hearts, thoughts, and prayers. I am so happy to hear that Scarlett is progressing so well! Lots of love,
    The Poor Family - Washington

    Anonymous said...

    well, I guess you could say 4 weeks down, 44 to go. Each week will get you closer to that end goal. Just hang in there and savor the good moments to get you through the rough times. May you be blessed with more good than rough times!

    Lauren said...

    Glad there is an end in sight. Praying that it goes by quickly and smoothly for you all.

    Anonymous said...

    So glad she is doing better! Thinking of you guys every day.
    Sarah, BBC Nov. 2010

    Anonymous said...

    Yay!! So happy to hear that the little butterfly is doing better!!
    Getting ready to light a candle for you and your little one and say my prayers ; )
    God Bless you and Baby Scarlett

    Cafemom (Formerly Babycenter)
    July 2010
    Boston, MA